I thought I could never accept my baby’s autism. After 29 years there are times when I still wonder who my son might have been, and who might I have been as well. Sometimes it seems like only yesterday when I held Tariq for the first time. My heart pounded with excitement as I held his soft body next to my heart and our eyes met. Instantly he made me a father with visions of playing baseball and building model airplanes together and having a warm, close relationship.
Then everything changed as the “autism bomb” hit and he began endless repetitive activities. He stopped sharing his joy in playing and stopped talking. A few years later he was diagnosed with autism and mental retardation. The impact sent family life veering sharply from the course we were on. That I would lose my perfect baby was beyond anything I could fathom. I can remember believing that I would never smile or laugh again if he never spoke again.
How could it be that he would grow to adulthood and not read or write or speak? It is a grief like no other. My dream of a healthy child shattered. As it is for so many people in this situation, my hope for a cure would live on. For a long time I believed that the best medical care and my love and efforts would change him. Parents need support and good services to come to terms with what is possible and what is not for their child. I could not have ever found peace without support. My wife Cindy, Tariq’s step mom, weathered the storms of his autism with me and never wavered in her love. She knew autism from working in the field and helped me grasp the diagnosis I was trying desperately to deny. It took me two years before I could utter the word “autism”. Good services and hard work do help tremendously, but autism can be relentless. Frantically and persistently, 25 years ago, I followed various treatment approaches: behavioral, educational, dietary, and developmental. Our culture tells us that with hard work we have the opportunity to achieve anything. Yet, despite intensive treatment, he did not make dramatic progress. I worked so hard to change him, but in the end I would have to say that he has changed me. I learned deeply through my experience, what Kahlil Gibran meant in The Prophet when he wrote that joy and sorrow are inextricably woven together, for sorrow opens our hearts to the experience of joy in everyday life. Accepting that his condition would be enduring was imponderable. Nonetheless I learned the developmental approach of celebrating what he could do. This made a huge difference for our relationship. He became a happy child, and I learned to enjoy him and accept him as he was. When I played with him in the ways I thought were weird, he laughed and responded and was happy. When I constantly pushed him to look, to feel, to do the things that seem ‘typical’, he was frustrated and cranky. The autism which I hated with a vengeance refused to go away. On the path to acceptance, I have learned many things that have helped me. My son taught me the meaning of unconditional love--to honor his sacred right to be loved for who he is, not what he has achieved lately, how he looks or how much money he will earn. I learned the lesson that hard work isn’t everything. That grief comes and goes. That anxiety and sadness come and go. That it takes time to heal a broken heart. That happiness and meaning can abound with acceptance. We don’t have to push away our painful thoughts and uncomfortable feelings. I learned that acceptance does not mean giving up but rather learning to live with our mental and physical challenges. I still try to get Tariq to look at me, to sit with me, to communicate with me. And simultaneously, I offer to do the activities I know he will enjoy and offer the food he loves and the freedom for him to be himself. Sometimes the best way to help yourself is to help others. Through my own struggles I tried reaching out to help others and it worked, not just for them but also for me--and I haven’t stopped for the past 20 years. I try to help others to grasp the diagnosis, knowing how hard that is and how much they do not want to. I have learned that this is necessary for the lives of parents and children. I try to help them to learn the lessons of acceptance. Several themes emerge as parents travel the road to acceptance. Initially parents struggle with the symptom clusters of autism: problems with speech and language, difficulties relating to others, and repetitive activities. Time stops as parents initially become very upset with their child’s difficulties and struggle to accept their child’s eventual diagnosis. They begin the protracted journey to put together the appropriate interventions. Through the heartache, in the passage to acceptance, they love their children passionately, they learn everything they can about their children, about autism, and they learn about themselves in the process. Some go on to create programs and services for others. When parents get more comfortable talking about how life really is with their child, they often reveal signs and symptoms of clinical depression, anxiety, traumatic stress, anger management issues, sexual dysfunction, etc. All the while love makes giving up unthinkable. The goal in acceptance is helping people to regain balance, take care of everybody’s needs, and rejoin the current of their lives. This involves endurance, courage, and accepting whatever remains unchangeable. In my work with parents, I first try to help them really look at their grief. It doesn’t help to pretend to be positive when underneath you may be lonely, afraid, or sad. I learned we don’t have to lie to ourselves. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life. Our life force is resilient, but the longing for the healthy child or a typical existence may endure. You have to learn to live with that yearning, but you don’t have to lie to yourself about how hard this can be. As the eminent child psychiatrist D.W. Winnicott said, “Mothers are helped by being able to voice their agonies at the time they are experiencing them. Bottled up resentment spoils the loving which is at the back of it all.” Feeling our experience is the first step in handling it wisely. Secondly, I try to help people accept themselves just as they are. This is key in accepting our children with an open, kind and loving heart. A perfectly lovely child or adult on the spectrum can be very hard to be with because of their behavioral, social, or communication issues. But when you love someone, you expect yourself to love to be with them. When you don’t feel that and think you should, the guilt can be unbearable, and your heart aches. This is an inner conflict that any parent can relate to, but when a child has autism, this can happen much more frequently. You cannot accept yourself or any experience without seeing it clearly and with compassion in a tender sympathetic way. What Tariq has taught me besides accepting him is to accept myself. The challenges in our children radiate inwardly to our own imperfections. I had to begin accepting my own flaws, warts, and blemishes—things I could work on and change and things I could not. As Carl Rogers taught, when we accept ourselves, only then can we change.
Finally, accepting our pain and ourselves leads to accepting and enjoying our child and our family life. That awareness is the gateway to love and wholeness. Children and adults on the autism spectrum bear witness to the diversity of the human condition and the resilience of our soul. We are all so perfectly imperfect. Awareness keeps the heart open and the mind as clear as possible. Yearning for what we don’t have blocks knowing and loving the child we do have. Seeing our child for who she is and giving what she needs from us to whatever extent that is possible. This is the path of acceptance for families. We don’t have control over the autism, but we do have a lot to offer in our relationship with our child or loved one who is living with this condition.
I have come to know that Tariq’s life does make a difference in the world. He is still my little boy. He still puts his head on my shoulder, and I have never stopped wanting to hear the sound of his voice. Yet I love him no less because of that and perhaps more in ways I could have never imagined. He has brought many kind people into my life and helped me to understand myself and others. He made me a better father and a better man. His greatest gift to me is a glimpse into the human heart where it is not who you know or what you know or what you have--but who you are. My son has only ever spoken aloud to me once in a while - in my dreams; but this is how his autism has spoken to me every day.
Robert A. Naseef, Ph.D. is the author of Special Children, Challenged Parents and the co-editor with Cindy N. Ariel, Ph.D. of Voices from the Spectrum. Together they founded Alternative Choices in Philadelphia, an independent psychology practice, www.alternativechoices.com.